View/Open

Author

Primary Supervisor

Other Supervisors

Year published

Metadata

Abstract

A grounded theory approach was used in this study to explore the individual needs of
parents raising a child diagnosed with disability. The focus was on what parents
regarded as their personal and support needs, how they met them and how they would
have ideally liked to meet them. Of particular interest were the strategies parents
developed and implemented in order to manage and meet their personal and support
needs to achieve some sense of normality in their family lives. Parents not only have
support needs specific to the challenges of accepting and raising a child with a disability
but more wide ranging personal needs that for the most part are neither understood nor
recognised by health professionals and service providers.
Existing research has primarily examined families of children with disabilities from the
perspective of health professionals. There was almost no research to guide health
professionals about the involvement of parents in decisions about interventions to
secure the child’s future and family viability. Much of the established research has
approached issues for parents from the perspective of the child’s health and medical or
rehabilitative needs, rather than meeting parents’ needs and the processes of
“normalising” family function. Research has failed to consider what parents perceive
they need to enable them to cope and how to support the family unit so that a diagnosis
of disability does not ultimately destroy the relationships within it.